Risk

Written 13th December, 2014.

Last Tuesday we had what Professor Brosens described as a ‘highly reassuring’ scan. We are now over 11.4 weeks and the baby was leaping and dancing about, kicking and hiccoughing. As I commented to the consultant who scanned me, we’ve never seen one that big before. Every good scan means that it is just a little bit more likely to happen this time. The odds are, as you might say, increasingly are in our favour. But can we relax? Of course not.

Next Tuesday afternoon is The Scan. The Big One. 12 weeks. And we’ve been there before, and it was not a happy experience. Although we’re beginning to turn our minds to the possibility of there being a chicken, we’re still not quite ready to actually count it.

The 12 week scan comes with tests (http://www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx#close) which we both (think we) want (great if the results are good) and don’t want (what if they’re bad?). The consultant gave us a bit of a talking to to ensure the implications of getting those test results. We have been through so much already. Have we considered what the possibility of high risk results might mean for us? She hastily assured us that she had not noticed anything on the scan that made her mention it, in particular, but that she felt that too many people have the standard tests without really thinking carefully about the implications of the results. The first thing to do is to realise that risk is not diagnosis. Lots of people, apparently, don’t understand the difference. So a risk of 1:150 is considered ‘high’, but, of that, it means that 1 baby in 150 with those results would have a condition such as Down’s Syndrome. 149 babies would be fine. It’s still pretty scary, though. We’ve been through so much to get to this point. Would we make a choice to end it? No. I don’t believe that I would even consent to further invasive tests like amniocentesis because of the 1% risk of miscarriage. But I think that knowledge is better than no knowledge, so we plan to go ahead with the screenig next week.

The odds are in our favour (mostly – they were more in our favour three years ago when we set out on this journey, but what can you do about time?). How much more can we take? Could we ever do it again, even if it works out? We always thought we’d have more than one child, but it’s been such a a struggle to get to this point, and I’m not getting any younger, and the risks will only increase.

And I know too many stories. My own sad ones, and the sad heartbreak of other women whom have been kind enough to support me on this journey. You think what I’ve been through is bad? I know stories of recurrent miscarriage that break my heart and chill my blood. No-one can keep their innocence about pregnancy after this.

At the end of The Lord of the Rings: Return of the King (the film, sorry, not got my literary hat on this morning!), Frodo says: “How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back? There are some things time cannot mend. Some hurts that go too deep that have taken hold.” We did go back and are in the midst of having another go, but how many times can anyone do this? What has happened to us will stay with us forever. It has made us, in a really fundamental way, different than we would otherwise have been. What’s the cost? ££££ on counselling and cognitive hypnotherapy to try to repair the damage done by post traumatic medical shock. I still can’t look at other people’s 12 week scans on facebook. I think I could be The Old Woman Who Lived In A Shoe, with so many children I didn’t know what to do, and a babybomb scan photo would still turn my blood to ice. This is a terrible learned behavour. I feel sad that I seem to be stuck with it.

What else can I say? Wish us all luck for Tuesday.

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Time and money: just one of those things?

Written 15th November, 2014

After another week with very occasional light spotting, my nerves could take it no longer. The two weeks between the 6 week and the 8 week scan, given that babies #1 and #2 went between 6-7 weeks after seeing a heartbeat (normally regarded as a sign that all is on track and well) was making me anxious enough; the spotting was pushing me over the edge. I phoned the EPU and left a message asking for advice. They offered me an extra reassurance scan yesterday. I must say, for all my reservations about going back there, they have been very good to me so far. (Although my husband hates the car park with a passion because the card reader is out of order and the notes feeder doesn’t give change. It’s been like this for 3 years…).

Despite instigating this extra scan myself, I was filled with feelings of dread and doom from the moment it was booked. One of my current problems is that I get tired very early in the evening and end up going to bed at about 9-9:30, but I also get very hungry, so hungry I can’t ignore it, which wakes me up in the middle of the night (I’m a secret night-time yogurt eater). As a result of this combination of symptoms and the stress of the anticipation of the scan, I was laying away at 3 am the two night preceding the appointment wondering how the hell I was going to cope if it all went wrong again. How would I manage work? I am supposed to be leading a school trip next week, who will take the kids? How will I get everything sorted? How will I get the right care sorted for my ERPC, should I need one? Will I trust local services to do it, or will I run away to another hospital? Too many thoughts, driving me mad. I am not enjoying the psychological legacy of three missed miscarriages.

As it turns out, we have actually made time since last week’s scan. We’ve gone from 6.1 weeks (where I thought I was 6.3, and hence assumed all kinds of disasters) to 8.0 on the button, which is about 3 days ahead of where I expected to be. Of course, it’s a matter of fractions of millimeters at this stage, so no-one is concerned. The little heart is fluttering away (and so is the big one!), and we can say that another milestone has been reached. Phew! We were in and out in under 10 minutes today, and even managed to have a tummy scan rather than the undignified internal one (is it weird that I felt slightly cheated? I’m used to getting a closer look…). Although we are not even close to the edge of the woods yet, we are past ‘danger point #1’, and I am feeling encouraged (for now).

What’s the difference? I’m putting it down to the ‘magical’ combination of progesterone (400mg, twice daily) and heparin (those dreaded daily pricks – my husband does them – I can’t seem to find the nerve). I am so grateful to the team at Coventry for putting me on this course of treatment (http://www.uhcw.nhs.uk/our-services/a-z-of-services/consultants?cID=341). I believe that, without it, I would not have got past 7 weeks again. I am more convinced than ever that have not experienced bad luck, but suffered from a failure to properly investigate, diagnose and treat an underlying medical problem. Whilst I realise that funding is a serious issue, I also wonder, on balance, how much has been spent on the 6 lots of surgery I have undergone. I can never know, but my instincts tell me that the treatment plan I am on now might have saved #2.

I still think that taking aspirin as a precautionary measure prior to conceiving #3 may have interfered with implantation sufficiently to allow a Turner Syndrome baby to take hold, and, I wonder whether, had I not been taking it whether that one would have implanted at all. This is all speculation, of course. Lots more medical research is needed with much bigger, scientifically regulated, double blind trials to answers these questions once and for all. I’m very pleased to read that Tommy’s are going to launch a new early miscarriage research centre (https://www.tommys.org/new-research-centre). I expect many of my hunches will be borne out in the coming years, and couples won’t have to endure 3 miscarriages and be fobbed off with the ‘bad luck’ line in years to come. Getting real answers, sooner, if the tests are quick and reliable, and the appropriate treatment available will save a great deal of time and heartache for a lot of couples. I also wish that the long awaited results of the PROMISE progesterone trial (http://www.miscarriageassociation.org.uk/information/research/the-promise-trial/) would hurry up; it would be nice to see what the actual research says about at least some of the medication I’m currently taking!

As for me, I’m enjoying the mental relief I got from the encouraging scan of yesterday for a while longer before new scan doom sets in for next week. We know it can still go wrong…

It can’t do any harm… the aspirin problem

Following on from this, I have recently read an interview with Professor Arri Coomarasamy , Consultant Gynaecologist and Sub-specialist in Reproductive Medicine and Surgery at Birmingham Women’s Hospital. You need to scroll down to read it here: http://www.miscarriageassociation.org.uk/information/research/talking-about-research/ I will try to find, read and share the aspirin research that is referred to. It’s not the first time that I have heard that there has been a study which seemed to show that aspirin used in pregnancy WHERE THERE IS NO KNOWN BLOOD CLOTTING ISSUE may actually CAUSE miscarriages. This is really scary for the hundreds of women under the care local RMC clinics where they still prescribe it ‘just in case’. The advice in the College guideline (the official list of what treatments/medicines work for what condition) still doesn’t seem to have been updated to reflect new findings. As a matter of fact, my GP was sent a letter from a local RMC consultant this August (2014) saying that they were not aware of any changes.

The way I'm making sense of miscarriage

There is a belief in the Recurrent Miscarriage community (medical practitioners and sufferers) that baby aspirin (75-81mg) can help prevent future miscarriages. The idea is that it thins the blood slightly, meaning that it flows more easily to the uterus, the placenta and the developing baby. This can be effective if the patient has a known blood thickening/clotting issue, for example:

  • the antiphospholipid (aPL) antibody and lupus anticoagulant – this test should be done twice, six weeks apart, when you are not pregnant

Antiphospholipid (aPL) antibodies are known to increase the chance of blood clots. These blood clots can block the blood supply to the foetus, which can cause a miscarriage. (from http://www.nhs.uk/Conditions/Miscarriage/Pages/Diagnosis.aspx)

St Mary’s, London, also perform the TEG test (http://en.wikipedia.org/wiki/Thromboelastography), in which your blood is rushed to be tested straight away, while it’s still fresh to check for clotting disorders. I am due to have this test if and…

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The difficult demographic

In the very small bits of time when I’m not feeling sorry for myself, I feel sorry for the medical practitioners that come in to contact with women like me. Recurrent miscarriers; professional, educated late 30 something women. We are used to Getting Stuff Done. We’re clever, organised and our memories are long. And thanks to the Internet, we can research, read and gain at least a basic understanding of journal papers and read peer reviewed, published research. This ought to make us more difficult to fob off, but somehow this seems not to be the case. What is happening instead is that these kinds of character traits are making it easier to piss us off when we get fobbed off.

Don’t get me wrong, we know we’re the subjects of a very little understood area of medicine. RMC, after all, has been seriously underfunded for a long time. This is the case, in my view, because it happens to women and you don’t die from it. But there is current, peer reviewed research going on, and its high time that all of the major centres of excellence got on the collaborative bus, put their egos away and started moving forward.

Trying a new procedure at a new clinic (after reading their research) is not the same as going down to the health food shop and loading up your basket with as many supplements as you can carry, because you read on line that they worked for someone’s sister’s cousin. But some top consultants think it is the same.

I’ve been told IVF won’t help me, and I understand my medical issues sufficiently to accept this and not spend my money going privately for that treatment. I have also read several published medical papers on NK cells and new research on the dynamic process of implantation, and I don’t think it’s b*llsh*t. So I’ve made informed choices about what I need and what is worth paying for. Yes, I have also heard anecdotal stories of success, too. But I’m not just getting recommendations on buying a fridge, so, although they’re helpful, I’ve looked at research with medical authority, too. I’m not a fool.

The Philosopher R.M. Hare, in response to the question of whether unfalsifiable beliefs were meaningful and rationally held posits the theory of Bliks. In this theory, he gives the example of a student at university who thinks that all of the professors are trying to kill him. Nothing will shake his belief in this. Even when the professors are kindly towards him, he thinks to himself, “Aha! They are trying to  lull me in to a false sense of security before they strike!” This Blik is clearly insane, especially because no amount of evidence will persuade him to consider changing his view.

I am concerned that there are a few Bliks mixed in with the egos at some RMC clinics. And who suffers? Women and their partners who are looking for help and answers. We’re intelligent enough to know the difference between medicine and ‘snake oil’. Treating us as if we’re not is extremely frustrating, and I’m sure that everyone in the RMC world, on both sides of the speculum would agree that feeling wound up isn’t (literally) going to get us anywhere.

A little collaboration would go a long way. Bury the rivalry, please.

Practical Matters – What Happens at St Mary’s and Coventry RMC Clinics?

This post is intended to help ladies (and their partners) get an idea of what to expect if you have been referred for testing at these hospitals. I’m writing for those who have miscarried for a third (or more) time, as you are now officially sufferers of Recurrent Miscarriage, or Repeated Pregnancy Loss. You are probably in a state of grief and disbelief that you have miscarried again, at the same time as being determined to find some answers. You may have a helpful and supportive GP; you may not. Even if they are supportive, you will probably need to chase things up a bit, because although there are a lot of brilliant things about the NHS, sadly admin isn’t always one of them. See this post for more information: https://justonemoretimeagain.wordpress.com/2014/07/04/full-time-administrative-assistant-required/

These are my experience of these two hospitals. Your experiences might be slightly different, but hopefully this will be helpful to you. If you are able to do so, get your local hospital (wherever you had your last ERPC, if you had one), to send away the tissue samples from that procedure, or any tissues you have been able to recover, for genetic testing. If you take them to the hospital yourself, DO NOT allow them to be stored in formaldehyde, as this will make genetic testing impossible. This advice is from Prof Lesley Regan’s 2001 book, which you may find helpful: http://www.amazon.co.uk/Miscarriage-What-every-Woman-needs/dp/0752837575/ref=sr_1_3?s=books&ie=UTF8&qid=1409471375&sr=1-3&keywords=lesley+regan

A note on genetic testing; you may be asked to sign a parental consent form. This may be upsetting, but it is necessary, so it is good to be prepared to be asked to do so. Results from these tests take about 6 weeks and the consultant will normally phone you to tell you the results and follow it up with a letter. This information is very useful in determining what has happened in your most recent loss, and what might be able to be done to help you carry a baby successfully to term in the future. The NHS offers this kind of testing after three miscarriages, although, if there is a reason to believe that there may be a genetic issue in your or your partner’s family (many people live perfectly normally with a balanced translocation of chromosomes: http://miscarriage.about.com/od/twoormoremiscarriages/p/balancedtranslo.htm), then you might be able to get these tests earlier. Some hospitals will let you pay for these tests after 2 miscarriages, others will fob you off (I was told that they ‘didn’t have the right container’ after my second miscarriage, queue hysterical woman in backless gown – I always regretted not fighting harder for that one). You may be able to get your local services to order karyotyping for you and your partner, which will establish whether either of you have a balanced translocation that you may be passing on. Again, the results take about 6 weeks. All of this information will be very useful in determining your treatment plan for your 4th ‘try’, and your RMC clinic will want to take it in to account.

I was seen at St Mary’s last year (October 2013) and for the first appointment you will be scanned, medical history taken and lots of blood drawn. These are for clotting, thyroid and antiphospholipid antibodies.  You will need to go for a hot chocolate or something afterwards. You may wish to take your old notes and paper work copies with you if you have them, they may take some copies for your file. You may be invited to sign up for the TABLET test which is a study involving thyroid antibodies. Many of us donated a sample but were not used for the trial because we didn’t fit the criteria, but you might be, if you wanted to sign up.

If you need anything doing (hysteroscopy etc.) they’ll book that in. I had a septum removed, which was fine, like an ERPC with two coils and HRT for a month afterwards. It was a day procedure and not very painful. Things to consider for St Mary’s; they don’t allow partners on the ward, so you will be admitted and put in bed for the day and your partner sent away at 07:30 am and asked to come back at about 15:00 (they’ll call him). This is unlike other hospitals where you can wait together until it’s your turn. Take a good book. At St Mary’s, they also try to fit in as many operations as possible, which can mean that there is a long wait if someone’s procedure takes longer than expected. When I was there, someone was sent home and given a new date for surgery. This was obviously very upsetting for them. I think this is rare, however, and was caused by an earlier surgery of the day being more complicated than anticipated. It happens.

You might have a non-surgical procedure, or just the blood tests, so please don’t be worried that you’ll necessarily end up in theatre!

You’ll go back for repeat blood tests 6 weeks or so after the first lot and then have an appointment to give you all your results about a month after that. They’ll tell you what your treatment/plan will be and then you ‘go forth and multiply’ and call them when you’re pregnant again so they can do the TEG blood test again and decide whether you need anything for that, too, in a pregnant state, as it can change that result.

Many ladies have also been up for private NK (natural killer) cell testing with Profs Brosens and Quenby at Coventry. This costs £360 and you need to have had 2 periods before you go. They take a uterine biopsy and then advise what to do when trying again. Some people have told me that the biopsy doesn’t hurt. I found it quite uncomfortable both during and afterwards, but nothing that paracetamol won’t deal with. They usually recommend 200mg progesterone from CD21 to CD28, carrying on if you get pregnant, and then Heparin from ‘in uterine’ scan. If you have high NK cells, you may also be offered steroids, but other ladies will know more about that. I do know of at least two success stories from ladies who have been to this clinic.

The results of the biopsy take about 5 weeks and they will email you with the outline results and a time to call for your consultation. After that, you’ll be emailed a letter detailing your treatment plan. If the protocol doesn’t work within three months (as happened with me), they may suggest not using the progesterone until you get a positive pregnancy test.

You will need to not be pregnant for these procedures and tests, and hopefully the break from trying to conceive will help you to get your head around everything and heal emotionally.

I hope this helps some ladies (and their partners) to understand what tests they can expect at these clinics. Remember, 50% of couples never get a clear answer as to why this has happened to them. As distressing as this is (because we want answers), it’s actually good news, because it means that you have a very good chance of being successful without intervention in the future.

It can’t do any harm… the aspirin problem

There is a belief in the Recurrent Miscarriage community (medical practitioners and sufferers) that baby aspirin (75-81mg) can help prevent future miscarriages. The idea is that it thins the blood slightly, meaning that it flows more easily to the uterus, the placenta and the developing baby. This can be effective if the patient has a known blood thickening/clotting issue, for example:

  • the antiphospholipid (aPL) antibody and lupus anticoagulant – this test should be done twice, six weeks apart, when you are not pregnant

Antiphospholipid (aPL) antibodies are known to increase the chance of blood clots. These blood clots can block the blood supply to the foetus, which can cause a miscarriage. (from http://www.nhs.uk/Conditions/Miscarriage/Pages/Diagnosis.aspx)

St Mary’s, London, also perform the TEG test (http://en.wikipedia.org/wiki/Thromboelastography), in which your blood is rushed to be tested straight away, while it’s still fresh to check for clotting disorders. I am due to have this test if and when I am next pregnant. If it is positive, St Mary’s will prescribe 150mg of aspirin.

Many people, health professionals and lay people, advise and would be happy to take baby aspirin ‘just in case’ because it ‘can’t hurt’, and, in the months leading up to MMC3, before and during my pregnancy, I took it daily. I know it thins the blood, because at one stage I was covered in it. But that’s another story. I don’t think it did me any harm (except for maybe enabling me to implant a chromosomally abnormal fertilised egg – I wonder whether it contributed to my uterine lining being ‘less selective’). Baby 3 died of Turner’s Syndrome, and nothing on earth could have prevented that (except, perhaps me being 10 years younger!).

Professors Brosens and Quenby at Coventry do not share the view that aspirin ‘can’t hurt’, in fact they argue that it can be a contributory factor in miscarriage because of the implantation problems it can contribute to. Their article is here: http://www.news-medical.net/news/20130117/Miscarriage-and-molecular-signals-an-interview-with-Prof-Brosens-and-Prof-Quenby.aspx

Whilst it does not directly talk about aspirin here, part of their view is that many women with clotting issues mentioned above had perfectly normal pregnancies, so there must be something else going on. I haven’t seen the data, but that’s what they say. Instead, they recommend heparin injections during pregnancy, which they argue are more beneficial in promoting placenta formation and blood flow. I have been prescribed this for next time, also.

So now I am in the difficult position of having two potentially conflicting action plans from two different top RMC clinics, not to mention the reluctance of my GP to order the heparin injections without first referring me to a haematologist.

Lucky for me, it’s a moot point, for now! But I look forward (!) to arguing for my treatment plan with the top RMC consultants in the country the next time I am pregnant. Because that’s the kind of stress I will need at that point in time.

I’m not a doctor, and I don’t know whether aspirin helps or not. But it is clear that the jury is still out, and more research is needed. It may not prove to be as benign as some people think it is. It certainly does help some women, but my worry is that if that isn’t you, it could just hurt.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

Dr Google and fixing you in the real world

In February 2013 I spend a very upsetting morning Googling Asherman’s Syndrome on my phone in a hotel room in Yorkshire. It’s not something that I would recommend anyone do to themselves, ever. Yorkshire and hotels are fine, just stay away from Dr Google!

I had been referred back to UCLH for investigations due to my periods becoming very short and light, and I was getting a bit worried that this would lead to implantation problems, and infertility. I had had 3 EPCS and one hysteroscopy, so I wanted to be sure that no damage had been done.

I had been scanned on the Friday and this had revealed that I had an abnormally thin uterine lining (2.2mm, should have been 7mm). Everyone was very reassuring, and I felt that I was in good hands. A further scan had been arranged the following month.

Then I went up on the train to visit relatives for the weekend and stayed in overnight with my sister in a travel lodge. The following morning, I woke up very early and, not wanting to disturb my sister, I started checking stuff out on my phone; what was normal after gyne surgery; how long does it normally take to recover; complications after ERPCs; Asherman’s Syndrome…

Asherman’s Syndrome is a condition caused by gyne surgery and subsequent infection in which scar tissue adhesions grow and fill or block the uterine cavity by basically sticking the sides together. Symptoms include light or absent periods. Worse, one article suggested that the ‘base layer’ could be damaged and the uterine lining would lose the ability to grow. Permanently.

You can imagine that I had self diagnosed myself as incurably infertile by this stage and was beside myself with worry and anxiety.

After having a bit of a word with myself (and a text to tell me that I had used up all of my data allowance on my phone), and a bit of comfort from my sister, I tried to put it out of my mind.

I went back for a follow up scan at UCLH a couple of weeks later (inconclusive) and was booked for another one a couple of weeks later for further comparison. I felt I was in good hands, medically speaking, but I was fast losing hope of being able to conceive.

Then I got pregnant for the third time, and everyone breathed a sign of relief and forgot about the threat of the dreaded Asherman’s Syndrome.

Sadly, baby three was not for this world from the outset, as we would later discover (Turner’s Syndrome; another story for another day). After my referral to St Mary’s, I was scanned and was, again, told that my uterine lining was ‘abnormally thin’. There was also ‘something’ (possibly scar tissue) in there that would need further investigation. Another hysteroscopy was booked for three weeks later. I had gone to that appointment on my own for some reason (there were too many of them, I think my husband was on a course), and I had expected it to be routine, but when they told my that I needed more surgery, I burst into tears. I don’t know what I was expecting, but it wasn’t that. The dreaded Asherman’s was back on the table. The nurses assured me that it was a) only a possibility, and b) treatable, but it wasn’t a diagnosis I wanted to hear.

As it turned out, it wasn’t Asherman’s at all, but a birth defect in the form of a heart shaped uterus. Professor Lesley Regan removed the dividing septum in a straight forward procedure, I was fitted with two coils and given a course of HRT for a month, and I am now (as far as I know) as good as new, uterus wise.

It’s by no means the end of my journey, but it was nothing like as scary as Dr Google would have had me believe. I love information, and do still do research online. But, a lesson has been learned about letting the internet take my imagination and fear to some insane places. For the moment, at least…

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Testing Testing, 1,2,3…

In the UK, on the NHS, you are not considered to have a ‘problem’ with miscarriage until you have had three of them. In a row. If you have a THB (Take Home Baby) in amongst your MCs, the clock is reset. “Bad luck” is what they put it down to. And its not difficult to see why that is. The statistics tell us that MC is very common at least 20%, probably 25% of confirmed pregnancies will end in MC. And that’s just the ones ‘on the record’. I bet that if you asked 5 women of childbearing age about MC, you’d get a few stories back. That couple with that big age gap between their kids? I know what I’m betting on.

The advent of very sensitive HPTs (Home Pregnancy Tests) means that we know earlier and earlier when conception has occurred, and it all adds up. What might have been a slightly late and heavier than normal period 20 years ago is a very early MC now.

But that’s not the point. The real point is that it is a matter of fact that this happens to A LOT of couples, once, or maybe twice, and the very vast majority of those couples will go on to have subsequent healthy babies with no medical intervention (although it will, of course have been emotionally and mentally difficult for them, naturally). And, as a result of this fact, it is not financially ‘worth while’ (for want of a better phrase) to test every couple before they’ve got to the ‘magic 3’ unless there is a good reason, such as a known heritable genetic condition, or some other complication.

With respect to testing, I was lucky. Possibly because of having attracted the attention of a few Consultants, I was now ‘an interesting case’. I also have excellent GPs who were able to order the ‘cheaper’ bloods after MC 2 (clotting, some auto-immune etc.) and put us on a waiting list to talk to someone at our local hospital’s miscarriage clinic. The tests all came back ‘normal’. In fact, they would usually do them twice, but they were so normal, they left it at one round (presumably to keep the costs down, after all, I was not really officially entitled to them at that stage).

Having physically recovered from ‘Retained Products Gate’, off we duly went to our appointment. On the day, we were seen by the locum. What she told us would stop us in our tracks:

“IF YOU WANT TO HAVE A BABY, YOU WILL NEED TO HAVE SEX 3 TIMES A WEEK.” Well, f*uck me if it isn’t the Sherlock Holmes of fertility!

After that crashing disappointment, we eagerly awaited our next appointment a couple of months later. This time we were seen by a much more sensible Doctor who gave us lots of advice (stop being vegetarian – might help, might not, but at least you’ll have tried), a prescription for next time (baby Aspirin and progesterone pessaries), and a funny story about her cat (she had taught it to use and flush the toilet). We felt much more positive after that consultation. More importantly, we could put in to action two out of the three things she had said (I’m still working on that cat/toilet flushing thing).

This was shortly after Machiavelli (see previous post) had been killed on the road, so I was pretty much in the depths of despair, but at least we had some kind of a plan, and that was progress. When it comes to matters that take control of your health (and therefore your life choices, to an extent) out of your hands, having a plan makes a world of difference.

If you like, or feel you have been helped by what you have read here, please share it. If you want to see more, why not follow me? Thank you for reading!

The Facebook baby bomb

Social media is fun, right? Are you having fun yet?

I like Facebook. A lot. It’s fun to share status updates about what your dinner looks like, your cat in a box, and so on. We love it.

But sometimes Facebook can ruin your day. I’m taking, of course, about the MC-er’s dark nemesis: The 12 week scan photo. It catches you unawares; it won’t go away, no matter how many times you click ‘I don’t want to see this’ (go on, ask me why…). Even if you do get rid of it from you news feed (normally by un-following or de-friending the person concerned), it comes back again as friends ‘like’ and comment on it.

ARE YOU HAVING FUN YET?????

Of course, I’m not saying that people can’t share good news. Social media is a fantastic way to keep in touch with people in a weird active/passive way where you let the congratulations come to you. And it’s lovely to feel warm and loved. In fact, some of the biggest outpourings of love and support I have had have come from the Social Network. It’s the picture I can do with out.

Maybe it’s because I’ve never seen a baby shaped baby on a scan (MMC 3 had a discernible  head and arms at the 9.1 wk scan, and I swear I saw those arms wiggle. Although it might have been wind/hysteria). Maybe it’s because I’ve seen more ‘bad news’ scans than good, and I’m slightly traumatised by those grey, grainy images. Maybe I’ve just turned into a jealous old cow.

Whatever. The Facebook scan photo baby bomb turns a nice day into a bad day, and it comes right into your personal space without warning.

This excellent blog entry sums up very well what the FB baby bomb can do to a (mostly) sane woman: http://thingspeoplesaidaftermymiscarriage.blogspot.co.uk/2011/10/complete-guide-to-facebook-post.html

And I’ll tell you what, Facebook. I’ll stop posting pictures of the cat when you stop baby bombing me. Do we have a deal?

WELL, DO WE?

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The things we do

Tomorrow I’m going to put my body through a tough physical ordeal. I’m going to swim 2 miles in open water (http://www.greatswim.org/events/great-east-swim) for Tommy’s the baby charity (http://www.tommys.org/). I am quite apprehensive about it, to say the least.

Ever since I joined the unfortunate Recurrent Miscarriage club, I have felt compelled to engage in a range of what some might call ‘extreme’ behaviour (from the little reading I’ve done, people who have suffered trauma tend to do this). The lack of autonomy that any long term illness causes does make seems to make people want to do something to take some of the control back. So I swim. Outside. In lakes and waterways. Don’t misunderstand me, I enjoy it very much. But tomorrow’s two miles will be a challenge.

I want to write today about the part of my journey that took swimming away from me.

In May 2012 I had my second missed miscarriage (which I really didn’t see coming – I had, rather foolishly, believed people when they told me that I was unlucky, and it was very unlikely to happen again. Idiot.). The baby was showing no signs of coming away naturally, and so an ERPC (eugh phrase) procedure was booked for the next day. I’d had one of those in November 2011, so I knew what to expect. The procedure was uncomplicated, and I returned home to watch daytime TV and eat chocolate ice cream (not actually prescribed by the NHS, but helpful in their own way).

Two weeks later, I was still bleeding, quite heavily. I was still getting positive pregnancy tests. It was, as you can imagine, quite distressing. I put my mental recovery on hold while we tried to sort the physical stuff out.

After 5 weeks of ‘wait and see’, my GP sent me back to the EPU for another scan. There was some comparing of notes from my file and lots of to-ing and fro-ing. What was that mass?

MASS????!!!!!

A second ERPC was booked and a further scrape was done. You may be surprised to learn that these procedures are undertaken blind. Yes, that’s right. The surgeon CAN’T SEE WHAT THEY’RE DOING. This time, I lost a lot of blood (I’m not crying incompetence, I was red-raw inside and infection was taking hold. They wanted to make sure they got everything this time; it happens). I spent the day on the recovery ward having my bloods checked. Amazingly, because I am reasonably fit and active, I recovered well (thank you, swimming).

But it wasn’t over yet. I continued to bleed. We returned to the hospital again and this time saw the top consultant for a hysteroscopy (procedure where they take a look using a little camera). The mass was back. It couldn’t be removed for fear of causing damage (the dreaded Asherman’s syndrome, where scar tissue fills the uterus, and can lead to infertility). This wasn’t the news I was hoping for.

At this point, my local hospital referred me to UCH in London so that someone else could have a look. I must say that the EPU in UCH is like the Disney Land of EPUs. Its set up so well and everyone there is really great and taking care of you. More on them another time. On this occasion, I was scanned by 2 consultants who diagnosed retained products and booked me in for another ERPC in a few days time. I was blooded and consented and ready to roll.

The next day, I received a phone call from UCH, could I come back in NOW, the top consultant wants to have another look. So (not panicked at all), I returned to London. This time the plan was more conservative. What I had was a massive blood clot. My poor uterus (not following the stoic example set by the mind) had given up and simply couldn’t be bothered to heal. This was quite common and is sometimes observed in breast feeding mums, I was told. Its hormonal. Your body doesn’t know what to do and has given up. I was prescribed 2 weeks of HRT, which kick started the whole cycle and two weeks later I was back to ‘normal’.

I was, obviously, unable to swim (certainly not in lakes and waterways) for the whole summer. Gutted.

I shall have to remember how much I missed it when I’m half way round Alton Water tomorrow!

http://uk.virginmoneygiving.com/RossisRiding (My DH is also fundraising for the same cause by riding the London 100 in August, hence the shared page.)

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